As much as I try to shove this feeling aside, there’s a part of me that quietly dreads this time of year. Amid the beach days, hot weather, and all the other joys this…
Read more
I’ve slept with a BiPAP machine every night since I was 1 year old. (I’m 33 now.) This noninvasive ventilator delivers pressurized air to my lungs, providing my weakened muscles some respite by…
With every caw of a seagull and crash of a wave against the shore, I swore I felt every stressor in my life exit my body. OK, maybe that’s a bit dramatic. But the…
As I stared at the rolling green hills before me, I wondered what 8-year-old Alyssa would have thought of this moment. It was my nonprofit organization’s first charity golf tournament in almost six…
With August officially here, I feel like I’m in a competition with time, frantically trying to make the most of summer before it’s gone. In doing so, I’m putting unnecessary pressure on myself. I’m…
I don’t always feel helpless, but when I do, there’s a bug in my vicinity. My house has felt like bug central this summer, and I’ve strongly considered moving out. OK, the latter half…
When my mother was 7 years old, she moved to the United States without knowing a word of English. I’ve known this all my life but had never asked her what the experience was…
If you’re a soccer fan like me, I imagine you’re thriving at this time of the year. Because I grew up in a proud Portuguese family, the sport is a huge part of my…
The delicacy of my health is no joke, but during a recent appointment with my ear, nose, and throat specialist, I had to laugh. In addition to living with spinal muscular atrophy (…
While living with spinal muscular atrophy (SMA), losing physical abilities is expected due to the progressive nature of the disease. Yet, even though I’ve been accustomed to this grim prognosis, sometimes I’m…
Living with spinal muscular atrophy (SMA), I’m often met with this question from others: “How do you do it?” Upon learning how much goes into living a life full of health…
This column describes the author’s own experience with a Spinraza (nusinersen) injection. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I…
After closing the tab on my browser, I couldn’t help but wonder how much progress I’d made in the past year that I failed to notice. My words on the screen were there in…
Get regular updates to your inbox.
